Activities of the ECD Global Alliance

  • Host an annual International ECD Patient and Family Gathering
  • Support the annual International ECD Medical Symposium
  • Hold regular online chat sessions to allow those affected by ECD to share information and provide mutual support
  • Maintain a website dedicated to ECD
  • Provide educational material related to ECD, including patient brochure  and professional brochures explaining ECD, a flyer that provides general information about ECD, and links to relevant technical papers
  • Advocate on behalf of ECD patients to other support organizations, doctors and lawmakers
  • Talk with researchers about ECD and advocate for research into the disease
  • Publish a newsletter devoted to stories and information of interest to those affected by ECD
  • Engage in social media to increase awareness and provide support via Facebook, Twitter, and Rareconnect
  • Provide a networking directory of ECD Global Alliance members to patients and caregivers wishing to participate
  • Fund ECD research through grants
  • Provide researchers with a communication mechanism to quickly reach ECD patients

Last updated: February 12, 2016

Contact Us

  • ECD Global Alliance, P.O. Box 775,
    DeRidder, LA 70634 USA

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Copyright 2017. All rights Reserved ECD GLOBAL ALLIANCE. A 501(c)(3) organization